Women and Girls: Autism’s Lost Tribe

There is an oft-repeated statistic concerning the ratio of boys to girls with autism: That ratio is 4-to-1 in favor of having boys. I happen to think that particular statistic is not true. Many women with autism are diagnosed later in life, often in adulthood, and many after learning of the autism in their children. So, why are we being diagnosed so late, and so few in between? I believe that since the industry is male-dominated, there is bias towards males in the theories, diagnosis and treatment in relation to autism itself. For those reasons, girls and women with autism often become a lost tribe in diagnosis and treatment.

I was one of the lucky ones, to receive a diagnosis in childhood. I was told to be “a little autistic, a little aphasic…” And by sheer luck, fate, or as we put it, the Grace of God, my mother was able to diagnose autism in me. Here is how my mother puts it:

The first time I heard “autism” was up in Fresno. They said to me “you don’t want to give the diagnosis of autism.” I said “without the label, how was she supposed to receive help?” I fought with the label until she was in fifth grade. I had to go to fair hearing to get your diagnosis accepted – and they still did not acceptance….the label of autism was worse than death. There was no hope until I met B.J. Freeman at UCLA, to get your true diagnosis.

A little background on her statements: We lived in Fresno, California when I was six. I was eight when my mother met B.J. Freeman. I was ten in the fifth grade, held back for a year for “social growth.” The only teacher to take my mother seriously was my RSVP teacher my senior year, and only after an embarrassing incident involving my backpack, but that’s another story.

I still consider myself one of the lucky ones, since I received my diagnosis before adulthood. Most women begin their autism journeys with self-diagnosis. There are harmful biases towards males in the theories, diagnosis and treatment in relation to autism in women. We become a lost tribe.

The biases in diagnosis are the most subtle, because more attention goes to the boys due to the more aggressive “masculine” behavior preferred on boys…but not too much. Let me explain: in this culture, boys are believed to be more aggressive, more assertive, and allowed to be more belligerent in their behavior. However, there is a cliché about “proper” behavior: “Children should be seen and not heard.” So, when boys are given leeway to be belligerent, the autistic ones are more likely to be disruptive. I observed an autistic boy in kindergarten. He was accepted to be what I never really was allowed to be – loud. Girls, however, and supposed to be “sugar and spice and everything nice.” We are taught that quietness, passiveness, and going along to get along are virtues. Quietness is rewarded. The autistic quietness and passiveness are rewarded. We mimic behaviors of neurotypicals, too. Simply put, girls are rewarded for being introverted, a stereotype of being autistic. Since “children should be seen and not heard,” the boy attacking another is going to get more attention than the girl sitting quietly and staring into space.

The theories of autism are even more male-biased. Autism has been described, even by an article in Time Magazine, as an “extreme male brain.” Now, this “extreme male brain” theory is due to less empathy, better performance at analysis, and more masculine interests. However, theories must be taken with a grain of salt. They must be analyzed in the current 4-to-1 boy-to-girl ratio of medical diagnosis. Since more boys are diagnosed than girls, the data will obviously skew in favor of the boys. More research into autistic females is needed.

So, in light of biased diagnosis and theory, the treatment is going to come more easily to boys and men, than it is to girls and women. We are finding more and more girls diagnosed in adulthood than boys. The trouble with that is, later diagnosis leads to limited success. The results are clear: Girls and women with autism are more likely to be severely limited in romantic relationships, while boys and men are more likely to find romance and marriage. Even I myself, at age 38 as of this article, am living alone with my mother. My computer is my primary source of interaction with the world. I am also extremely resentful towards most of the Tustin Unified School District of Tustin, CA, for not taking my autism seriously. Due to my troubles in socializing, it took an apology from a former schoolmate to even begin accepting Facebook friend requests from my former schoolmates-and that was only after I explained some of my behaviors. (Check out “Facebook and the Mellaril Nightmare” for background on that.) Also, so many of us, myself included, have Post-Traumatic Stress Disorder for being raped, abused and manipulated by neurotypicals we should not have trusted. (Fortunately, only abuse is in my history, not rape. Again, lucky.)

I hope I can call for more research into the signs and symptoms of autism as shown in females, because we need it. I may have to donate my body to scientific research in order to contribute further, because I don’t think enough is being done to recognize and treat autistic girls and women. We are falling far behind our male counterparts, and I don’t think it’s really our fault.

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